Buch, Englisch, 144 Seiten, Paperback, Format (B × H): 170 mm x 240 mm
The QoLISSY Questionnaire User’s Manual
Buch, Englisch, 144 Seiten, Paperback, Format (B × H): 170 mm x 240 mm
ISBN: 978-3-89967-846-8
Verlag: Pabst Science Publishers
How do short statured children and adolescents feel about themselves and how do their parents view their children’s quality of life?
The present handbook describes the development in psychometric testing of a questionnaire to assess the quality of life of children and adolescents with short stature and their parents. In a process conducted simultaneously in five countries, focus groups yielded relevant statements which were included in a preliminary questionnaire to be rated by patients and parents, then revised, forward and backward translated into the different languages and psychometrically assessed in a field test. The handbook provides an introduction into the intercultural development of instruments to assess patient reported outcomes. Using pediatric short stature as an example it demonstrates how such an instrument can be developed and implemented into clinical and research contexts.
Autoren/Hrsg.
Fachgebiete
- Medizin | Veterinärmedizin Medizin | Public Health | Pharmazie | Zahnmedizin Medizin, Gesundheitswesen Epidemiologie, Medizinische Statistik
- Medizin | Veterinärmedizin Medizin | Public Health | Pharmazie | Zahnmedizin Klinische und Innere Medizin Pädiatrie, Neonatologie
- Medizin | Veterinärmedizin Medizin | Public Health | Pharmazie | Zahnmedizin Medizin, Gesundheitswesen Lebensqualitätsforschung (med.)
Weitere Infos & Material
1 Introduction
1.1 Purpose of the Report
1.2 Outline of Chapters
1.3 The QoLISSY Project
2 Short Stature
2.1 Epidemiology and Definition
2.2 Clinical Aspects of Short Stature
2.2.1 Aetiology
2.2.2 Diagnosis
2.2.2.1 Growth Hormone Treatment
2.2.2.2 Idiopathic Short Stature
2.2.2.3 Constitutional Delay in Growth and Puberty
2.2.2.4 Small for Gestational Age
2.3 Underlying Mechanisms
2.3.1 Growth Hormone
2.3.2 Normal Human Growth Pattern
2.3.3 Psychological Aspects of Short Stature
2.4 Treatment
2.4.1 Options
2.4.2 Indications for Recombinant Human GH (RHGH)
2.4.3 Psycho-social Interventions
3 Health-Related Quality of Life
3.1 Health-Related Quality of Life Research in Children and Adolescents
3.2 Health Related Quality of Life in Short Stature
3.2.1 Assessment Instruments for Adults
3.2.2 Assessment Instruments for Children
3.3 Guidelines for the Development of Patient Reported Outcomes (PRO)
4 Development of the QoLISSY Instruments
4.1 Rationale for the Development
4.2 Challenges in Developing a HrQoL Instrument
4.3 Review of the Literature
4.4 Description of the QoLISSY Methodology
5 Focus Group with Conceptual Model and Item Development
5.1 Objectives
5.2 Methods
5.2.1 Planning of the Focus Groups
5.2.2 Focus Group Procedure
5.2.3 Statement Transcription
5.2.4 Focus Group Conduct and Transcripts
5.2.5 Item Writing
5.2.6 Translation Process
5.3 Focus Group Results
5.3.1 Patient Sample
5.3.2 Card Sorting Results
5.3.3 Domains and Sub-Domains of Quality of Life
5.3.4 Preliminary Conceptual Model
5.3.5 Item Development
6 Pilot Test with Cognitive Debriefing and Item Selection
6.1 Objectives
6.2 Methods
6.2.1 Patient Recruitment
6.2.2 Pilot Test Questionnaire
6.2.3 Cognitive Debriefing
6.2.4 Data Management and Data Analysis
6.2.5 Statistical Procedure
6.2.5.1 Psychometric Analysis
6.2.6 Item Selection
6.3 Results
6.3.1 Patient Sample
6.3.2 Qualitative Item Analysis
6.3.3 Quantitative Analysis of Pilot Test Material
6.3.4 Summary of Item Reduction from Quantitative and Qualitative Analysis
7 Field Test and Retest with Psychometric Testing
7.1 Objectives of the Field Test
7.2 Methods
7.2.1 Study Design
7.2.2 Recruitment Procedures
7.2.3 Sample Size and Sample Characteristics
7.2.4 Study Instruments and Variables
7.2.5 Data Management and Statistical Analysis
7.2.5.1 Item and Scale Characteristics
7.2.5.2 Reliability
7.2.5.3 Construct Validity
7.2.5.4 Convergent Validity
7.2.5.5 Known Groups/Discriminant Validity
7.2.5.6 Agreement between Parent and Child Scores
7.3 Result of the Field Test
7.3.1 Description of the Patient Sample
7.3.1.1 Parent Sample Characteristics
7.3.2 Quantitative Analysis of Field Test
7.3.3 Psychometric Analysis Child Data
7.3.3.1 Scale Characteristics
7.3.3.2 Robustness of the Scales
7.3.3.3 Factor Analysis
7.3.3.4 Age and Gender Effects
7.3.3.5 Scale Intercorrelations
7.3.3.6 Convergent Validity
7.3.3.7 Discriminant Validity
7.3.3.8 Regression with Total Quality of Life
7.3.3.9 Differences in Satisfaction with Height
7.3.4 Psychometric Analysis Parents Data
7.3.4.1 Scale Characteristics
7.3.4.2 Robustness of the Scales
7.3.4.3 Factor Structure
7.3.4.4 Age and Gender Effects
7.3.4.5 Scale Intercorrelation
7.3.4.6 Convergent Validity
7.3.4.7 Discriminant Validity
7.3.4.8 Regression with Total Quality of Life Score
7.3.5 Concordance between Parent and Child Versions
7.4 Country Specific Data Analysis
7.4.1 Cross Cultural Samples
7.4.2 Sociodemografic and Clinical Data
7.4.3 Scale Characteristics and Reliabilities
7.4.3.1 Scale Characteristics and Reliabilities: Germany
7.4.3.2 Scale Characteristics and Reliabilities: UK
7.4.3.3 Scale Characteristics and Reliabilities: France
7.4.3.4 Scale Characteristics and Reliabilities: Sweden
7.4.3.5 Scale Characteristics and Reliabilities: Spain
7.4.4 Test-Retest Reliability per Country
7.4.5 Comparisons Across Countries
8 The QoLISSY Manual – Summary of the Questionnaire Development Process and Users Guide
8.1 Summary of the Questionnaire
8.1.1 Purpose and Development
8.1.2 Pilot Test
8.1.3 Field Test
8.1.3.1 Self Report Data from Children and Adolescents
8.1.3.2 Parents Data
8.1.3.3 Country Specific Data Analysis
8.1.4 Further Use and Cross Cultural Performance of the QoLISSY Instrument
8.1.5 Guidelines for Users
8.1.5.1 Instrument Description
8.1.5.2 Transformation and Reference Values
8.1.5.3 Administration – Suggested Uses
8.1.5.4 Uses of the QoLISSY Measures in Individual Patients
8.2 Conditions for Use
8.3 Summary Sheet
9 Literature
Appendix
QoLISSY C
QoLISSY P
